Then I watched the Dateline / Matt Lauer interviews and exposé, A Dose of Controversy, about where that suggestion came from, profiling Andrew Wakefield, the doctor/scientist who first suggested that link existed, and who is now hailed a hero by many of those parents who still believe in the connection.  Also interviewed were two more major players in the argument – Brian Deer, a British journalist who has exposed Wakefield over and over again, and Dr. Paul Offit, infectious diseases expert from Children’s Hospital of Philadelphia, who has written a book called Autism’s False Prophets which lambasts Wakefield’s work.

Matt Lauer pulled no punches in his questioning of any of the three.  It’s very clear that the worshipping behavior of these parents who believe that somehow Andrew Wakefield represents the second coming is misplaced.  But even more than that – it’s very easy to see how we observers must use the follow the money rule on all three of these men.  Perhaps an even bigger lesson has to do with LISTENING.

But we also must remember in the midst of this — that many studies (I can’t find a number, but it was suggested there were at least dozens) — studying, literally, MILLIONS of children — have proven every time (not just some, but every time) that an autism-vaccine link DOES NOT EXIST.  Even The Lancet, a highly respected medical journal, the one which originally published Andrew Wakefield’s article about that link, has stated that they never would have published it if they had known how Wakefield’s work had been funded (see below.)

Follow the money (FTM) — it’s the rule that helps explain a lot of the “why’s” in healthcare.  Here are examples, as applied to the questions about autism:

FTM explains why Andrew Wakefield would continue asserting that the MMR vaccine causes autism — because he is/was paid in at least two ways to make sure that was clear.  First, he was paid at least $750,000 by a company that developed a measles-only vaccine that could have been used as a substitute for the MMR.  Now, under suspicion for other (unspecified) charges in his native England, he has set up an outpost in Austin, Texas (have to wonder about the wordsmithing there — Austin and Autism) — but is not licensed to practice medicine in the United States.  Parents are paying thousands of dollars to have their children tested for certain gastrointestinal problems possibly related to autism, but it was unclear as to whether any children have actually been helped by Wakefield.  Further, outside of parents talking about how wonderful he is, none seemed to be able to pinpoint exactly why — except that he listens.

(All other doctors of every stripe — please take heed of that — HE LISTENS.)

Brian Deer – his FTM is a bit easier to track.  He is paid to do his investigating and writing, so finding a goldmine like Andrew Wakefield is job security.  It should be noted that Deer also needs the money to defend himself legally. He has been sued a number of times by Wakefield — always unsuccessfully — Deer has always prevailed, able to prove that his allegations about Wakefield were accurate and defensible.

Dr. Paul Offit requires some FTM analysis as well.  Beyond the income from his book where he alleges that parents have been scammed by Wakefield for more than 10 years, he is full-on supportive of vaccines – including the fact that he is the developer-inventor of one vaccine.  So yes, he makes money as the developer of the vaccine, which seems to be unrelated to autism.  Interestingly, he has an expense many would not ever think of — he is forced to pay for bodyguards, because some of those Wakefield supporting parents have threatened his life.

Here are some beliefs I hold, which affect my beliefs about this controversy:

• I absolutely believe each of these parents who has observed their children well enough to say “She was fine, then she got the vaccine, and something happened.”  I don’t question that for a minute, because I do believe parents are THAT WELL tuned in to their children.
• I also know human nature well enough to understand why parents cling to any belief that would help them explain something that is otherwise not understandable.  As humans, we all want to assign blame. It’s the reason we can’t cope with problems like Hurricane Katrina, or any other mother nature related catastrophe — because there’s really no one to blame.  By clinging to the vaccine-as-perpetrator, parents have someone to blame, plus the bonus of a hero in Wakefield.  (Plus making Jenny McCarthy a hero — another story for another day.)
• When people are desperate, like these parents with autistic children, they will go to extremes, even when those extremes don’t make sense.  To so desperately believe in something that has been disproven in so many ways, and to be threatening the life of someone who truly makes sense — these are moves of desperation.

Combining those beliefs, and having done a brief FTM analysis – we have to look at some bigger picture questions, too.  I provide no answers here — I’m just sayin’…

• So what if Wakefield and all these parents are right?  What if the MMR vaccine DOES trigger something that causes autism?  Maybe it’s not the vaccine itself — maybe the child happened to have eaten something that day, or has another very mild, asymptomatic virus or bacteria in his body — or ?  It could be the vaccine in a combination with something else – I do know a genetic link is being studied, too.
• Even if there is a link — how does that change things for the parents whose children do have autism?  It doesn’t mean there is a cure.  You can’t subtract the vaccine from their bodies.  So why would parents put so much energy into their hero-making – at the expense of taking time away from their own children to do it?
• Autism is a “spectrum disorder” — is it possible it’s not just one thing?  Is it possible that even though the symptoms and some of the behaviors are similar, that these children really have different disorders — triggered by different things?  Whose to say that some forms of  ADHD, for example, aren’t really a part of that spectrum?  I know there are many discussions of misdiagnosis among both autism and ADHD diagnoses….

Finally — I believe the bottom line here is the fact that NONE OF THESE PROFESSIONALS get the fact that the passion and desperation fuel this fire and that the people who feel the most maligned (the parents who believe in Wakefield) do so because they feel that he LISTENS.

And that is the bottom line for today’s very long-winded post.  We all need to listen more because listening, then responding appropriately, will lend itself to compromise and understanding — no matter what the controversy.

I’m listening — what can you tell me that will help explain what I don’t understand?

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As predicted, the fearmongering, half truths and out-and-out lies about healthcare reform have begun in earnest.  I received an email from a dear and respected friend yesterday and was appalled at the dis-information it contained.

So I’ve decided to share the email with you and show you where it is wrong and why you need to question anything you hear in these kinds of emails, blog posts and other pieces you may read.

The email, called SENIOR DEATH WARRANTS is printed here in its entirety.  I’ve footnoted my responses below.

The actress Natasha Richardson died after falling skiing in Canada. It
took eight hours to drive her to a hospital. If Canada had our healthcare she might be alive today. In the United States, we have medical evacuation helicopters that would have gotten her to the hospital in 30 minutes. (untrue – see comment 1)

In England anyone over 59 cannot receive heart repairs or stents or bypass because it is not covered as being too expensive and not needed.  (untrue - see comment 2)

Obama wants to have a healthcare system just like Canada’s and England’s. (untrue - see comment 3)

I got this today and am sending it on. If Obama’s plans in other areas don’t scare you, this should! Please do not let Obama sign senior death warrants!!

Everybody that is on this mailing list is either a senior citizen, is
getting close or knows somebody that is.  (true!)

Most of you know by now that the Senate version (at least) of the “stimulus” Bill includes provisions for extensive rationing of health care for senior citizens. (untrue – see comment 4)

The author of this part of the bill, former senator and tax evader, Tom Daschle was credited today by Bloomberg (untrue - see comment 5) with the following statement:

Bloomberg: Daschle says “health-care reform will not be pain free. Seniors should be more accepting of the conditions that come with age instead of treating them.”
(untrue – see comment 6)

If this does not sufficiently raise your ire, just remember that our esteemed Senators and Congressmen have their own healthcare plan that is first dollar or very low co-pay which they are guaranteed the remainder of their lives and are not subject to this new law if it passes. (true!)

Please use the power of the Internet to get this message out. Talk it up at the grassroots level.

We have an election coming up in one year and nine months, and we have the ability to address and reverse the dangerous direction the Obama administration and it allies have begun and in the interim, we can make their lives miserable. Lets do this! (see comment 7)

Comment 1: Natasha Richardson fell and hit her head, and refused to be taken by ambulance to the hospital.  No one can be treated if they don’t seek treatment.  Yes, later her husband phoned for help, but by then it was too late.  Could they have taken her by helicopter for help if she had been in the US?  Maybe — but we will never know.  This form of condemnation of Canada’s healthcare system is purely speculation.  No matter what country anyone lives in, they won’t get care if they refuse help.  News articles indicate that helicopters are available for transport in many areas in Canada, but not remote areas.  That is true in the US, too.

Comment 2: I went straight to some doctors in the UK for this answer ( I network with many doctors in England on Twitter.)  They assure me that there is no such policy.  One even asked me “is that a serious question?”

Comment 3: I have scoured the Internet and can find no where where any bona fide news organization has reported that Mr. Obama has made any such statement.  There are blogs, comments and editorials on some news websites, but no hard news anywhere that reports this statement or any statement like it.

Comment 4: The stimulus bill has nothing to do with quality of care or delivery of care.  It does contain $57 billion for development of an electronic medical records system which will eventually cut the cost of care and will improve the safety and delivery of care.  Will rationing take place?  Of course it will.  It already does.  But that has nothing to do with the stimulus bill!

Comment 5: Bloomberg has never quoted Tom Dashle saying any such thing!  I checked in with one of my favorite resources, Politifact and they spell out exactly how this rumor came to be.

Comment 6: In fact, that quote came from Betsy McCaughey in the form of a letter to the editor.  And while I have admired Dr. McCaughey’s work in hospital acquired infections for many years, I believe she is WAY off base by making such a statement.  Inflaming an already contentious argument does not help. (Update: McCaughey is truly going off the deep end, now making statements that the healthcare reform will will make it mandatory for Medicare recipients to go through required counseling to tell them how to end their lives sooner.)

Comment 7: Healthcare reform is going to happen.  We can make it easier on ourselves by dealing in the truth, and helping the cause.  Or we can make it far more difficult on everyone by fearmongering and inflaming.  Sending an email full of half-truths, lies and speculation doesn’t help!  If you truly want to get involved at the grassroots level, then I ask you to instead contact your local congress person and share your feelings about what is important to you.

Read more about the Senior Death Warrant at my About.com blog.

……………………………..

Do you have concerns about healthcare reform?  Have a rumor or concern you want clarified?  Pose it here and we’ll try to uncover the truth.

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Having suffered months and months of treatment for his brain cancer, Asa’s life was almost lost due to the arrogance of the resident who was in charge of his care.

Read Franny’s story and see what you think. Then see if you agree with the steps she took afterward or whether you might have done something else instead.

A Doctor’s God Complex, a Life Nearly Lost

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I share it with you today, because it provides two lessons for us.  First, that whenever we access medical information, we must be sure we are assessing it objectively, and getting objective information from it.  And second, because it reminds us that medicine is so very personal, that almost no medical information can be completely objective.  Even those strictly scientific medical research results we find?… they were biased to some extent when they were designed.

Among those of us who bring you patient empowerment and patient safety information, we do try to be as objective as we can.  But…… well….. read what Dr. James has to say…. )

……………………………………..

Healthcare Journalism and Truth

A perspective article in the New England Journal of Medicine gave me a dose of my own medicine to ponder. Susan Dentzer, a medical journalist, poses important questions about the role journalists should assume in communicating information to the public.6 To what extent should the big picture be conveyed? How far can one go in sensationalizing a reported medical discovery? Is the story I am writing something my readers might use to determine their own care, and if so do I have a responsibility to be more careful? How far should I go in mentioning caveats to the reported results? Have I over simplified the results to keep my story short?

I have chosen to become a medical journalist in a most unconventional way. I am neither a journalist in the usual sense, nor am I a medical caregiver. I am only a medical scientist trying to communicate to my readers the important patient safety findings that appear in selected medical journals. I am not making a living as a medical journalist. I do this because my heart has been broken by uninformed and unethical medical care, and I do not want this to happen to others.

My stories are intended to be useful to readers in their own medical care and to be useful in informing ordinary folks of risks associated with healthcare. I must ask myself, am I writing in a balanced, objective and clear way? I honestly struggle with these issues at times. Medicine is incredibly complex and placing new information in perspective is not easy. If I seem at times to give medical advice, this is not my intention. I seek to convey scientific facts to you that will help you ask the right questions of your doctor. I’m not a physician, and I don’t pretend to be one.

Am I biased in my reporting to you? As much as I want to be objective, those of you who have read my book know that I think we have an unethical, dangerous and profit-driven healthcare industry. I will do all I can to expose examples of these problems and show how we might one day have an ethical, cost-effective, inclusive, and trustworthy healthcare system. I am biased that way.

As careful as I try to be, I will make errors of perspective and balance in my stories. For all the criticism I level at the American healthcare industry, I too shall err.

~ @ 2009  John James, PhD

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I had a routine colonoscopy, then 5 days later, I began to hemorrhage and passed out on the street corner. Some passerbys helped me and called an ambulance, but I ended up in the St XXX’s ER, one of the 9 circles of hell. I had a second hemorrhage there and was hospitalized for 3 days…

The St XXX’s ER was so horrible – you should have a permanent station there! I was tucked away in a corner room alone. I was on a monitor and I began to feel bad – my blood pressure dropped dramatically (30 points) and I called out for a nurse. Someone was passing by and he said he’d be right back. He never returned and I was by myself for another 20 min – at which point, I realized that being good wasn’t going to cut it and I needed to be assertive.

I started shouting and some staff showed up. One woman was trying to draw blood from my hand, but I was shaking so bad (probably from the shock) that she couldn’t fine a vein, so she just kept poking me while I sobbed. She never looked at me, but instead carried on a conversation with someone outside the room about celebrity gossip.

The ER was also filthy – I saw so many violations of sanitary standards.

On a better note, the GI Attending was a great doctor and once I got to the ICU, the care improved dramatically.

It had taken me years to get up the nerve to have a routine colonoscopy – it’s rather ironic that I did this for my “good health” and ended up in the hospital.

I have nothing to add to this except to suggest you take a page from Susan’s book. BE ASSERTIVE if things are not going the way you think they should. Be the squeaky wheel!

Thanks for sharing, Susan.  You have provided someone else with what they need to advocate for themselves in a similar situation.

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Yeah — really, really rare. Because that’s a book used by oncologists all over the world.

Then, from Fall 2004 through May 2008, I heard from only two other people dealing with SPTCL diagnoses. One was a husband of a woman diagnosed. One was the friend of a person diagnosed. I never heard back from either one, so I don’t know their outcomes.

You can imagine then, however AMAZED I am, that I have now heard from three people diagnosed with SPTCL in the past four months!

Heather — we worked together and proved she had been misdiagnosed, too. You can read her story on my SPTCL page.

Cynthia — who has struggled and been treated for her SPTCL for two years or so.  Here’s her story in her own words.

And now Daniel — a 15-year-old boy whose mother, Sonia, contacted me. Daniel’s diagnosis is HIGHLY suspect, like Heather’s and mine. She’s still in the process of chasing down more details.  You can read the latest on Daniel here.

The point?  We are developing a community of people who can offer information — and hope — to others who have just received a devastating diagnosis, and are reaching out to others.

You can do the same!  No matter what your diagnosis, you can look for other blogs that address it, or set one up yourself.  Share information,  Vent.  Ramble.  Get angry.  Help someone else — the most important part.  We’re all in this healthcare thing together, you know.

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Never Events, as defined by the National Quality Forum, are those events which should never happen to a patient.  There are 28 errors on the list ranging from wrong site surgeries to drug errors to crimes committed by medical professionals.

Not included on the list from the NQF are HAIs (hospital-acquired infections).  There may be many reasons for this, but there are many groups and organizations that believe HAIs like MRSA, C.Diff and VRE SHOULD be included on the list.  Many of them, although not all of them, are preventable.

Regardless of what the left hand is doing (NQF), the right hand of payers (Medicare and many insurers) have decided that these infections will no longer be covered.  That means that any hospitalized patient who contracts, or at least presents with, an infection during a hospital stay may not be charged for the extra cost of treating the infection, nor will the hospital be paid by Medicare or many of the health insurance companies.

I don’t have the expertise to say whether this is right or wrong.  On the one hand, I believe it’s absolutely necessary to force hospitals to figure out ways to decrease the numbers of patients who contract these infections, estimated to be upwards of 5 million patients per year.

On the other hand, I know that sometimes patients arrive with pre-existing infections that may be apparent when they are admitted.  Can they be tested upon arrival?  Of course they can — although some hospital personnel point out how expensive that is, and that insurance won’t cover that either.  I have no doubt that there will be some problem for patients that crops up from this new ruling.  Hospitals will refuse to admit patients at risk, or they will discharge them too early so they can — at least in the paperwork — ignore an infection just as it begins.  Hospitals will do whatever they need to to protect their *sses — and it will be at the expense of patients.  Unintended consequences, all based on money.  What else is new?

During the past few days, a dialogue has taken place… wait… make that a diatribe…. on the blog of a certain “buckeye surgeon” where complaints and barbs have been thrown at a newspaper reporter who wrote about this October 1 date for reimbursement stoppage.  On just about the same day, the Wall Street Journal printed an article by Dr. Betsy McCaughey, founder of RID (Reduce Hospital Deaths) that gave some statistics about hospitals that have addressed infection problems — and have successfully reduced their numbers, one (claims) to 0 patients over a span of years.

So –I pulled some quotes from Dr. McCaughey’s WSJ article and posted them to the blog — and you would have thought I was the devil-incarnate…. whoa!  A regular lightening rod!  All those doctors so quickly turned their ire on me.  And I thought angry patients got worked up!  They can’t hold a candle to posters like “white coat” and “anonymous” who — God forbid — don’t even use their real names.

No — they attacked me one after the next.  In fact, it began when I suggested that SOME hospitals were actually trying to help patients!  SOME hospitals are actually asking their doctors and personnel to adhere to a checklist that — (you won’t believe this) — actually prevents infection!

Oh — one even attacked me for not being grateful that I was misdiagnosed with cancer.  She told me I should not have been upset at the misdiagnosis — I should have been relieved that I didn’t have it.  (My standard reply, which I didn’t bother with is — “gee — you didn’t get hit by a car today.  Are you relieved and grateful?”)  Of course — what on EARTH does this have to do with infections?  I’m not sure.

What’s the bottom line?  What can we learn from this?  Honestly — I do NOT believe that including HAIs on the list of never events Medicare and some insurances will no longer pay for was the right approach.  While some infections could have been listed and it would have been helpful, instead I think Medicare has only thrown down the gauntlet for hospitals to go underground.  Patients will pay the price in even worse health problems.  We must be more vigilant and be prepared to stand up for ourselves and our loved ones, and once October 1 rolls around, that will be even more difficult.

What the Trisha-bashing on the Buckeye Surgeon’s blog has shown me is that when we patients begin to stand up for our NEED for decent healthcare, we become the enemy.  The point I tried to make on a couple of the blog posts was that I think patients and providers need to remember that we have the same goal — improved patient care.  But those folks didn’t want to go there.  They just wanted to bash me.

I pray none of them is ever hurt by a medical error.  I hope none of them ever suffers at the hands of a medical practitioner who is probably just in a big hurry because he doesn’t get reimbursed well enough for his work.  I hope they don’t lose a loved one, like I did, after she acquires MRSA.

But mostly I hope they will stop taking their frustration out on the messenger.  Afterall — excuse me — I THOUGHT we all had the same goal?

Don’t we?

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John T. James, PhD, a dad — and now a fixer — posted about his son Alex, a seemingly healthy 19-year-old college runner who one day collapsed, was hospitalized, and died a few weeks later.

The problem is, of course, Alex should not have died.  He didn’t die because his body couldn’t handle his medical problem.  He died because his doctors couldn’t handle his medical problem.

Dr. James has written a book called A Sea of Broken Hearts — you’ll likely want to pick up a copy once you’ve read what he has to say. He’s on a campaign to improve patient safety and establish a national statement of patients’ rights, something that does not exist.  (Most are surprised at the lack of standard patients’ rights, but that’s absolutely true.)

One more reminder that life is precious — and if we don’t advocate for ourselves, and protect ourselves from healthcare, we may not survive long enough to right this deadly system.

Read what Dr. James has to say.  Get angry.  Then work toward being a fixer yourself.

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Because so many of you, my readers, have checked here to learn more about Randy Pausch, I bring to your attention a comment made by Claudia, one of you, on my February post.

Claudia tells us there is an update on Randy’s page, and he’s beginning to struggle further with his cancer. Here’s a link to the Randy Pausch Update Page. (and thanks for the heads up, Claudia.)

If you are not familiar with how hospice works, this is a great opportunity to learn about it. Just as we empowered patients learn about taking care of ourselves when we get sick and need medical care, it’s just as important to learn how to prepare to die.

Our well-being during the last few weeks or months of life, and both physically and emotionally, is supported during hospice care. Patients choose hospice care at the point where it no longer makes sense to pursue curative care.  Hospice supports palliative care which means keeping the patient pain free and comfortable through the point of death.  Learn more about hospice from my colleague Angela Morrow at About.com.

My prayers are for Randy’s comfort and peace, and just as important, his family’s comfort and peace during this time.

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Read previous posts about Randy Pausch here.

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PS — For those of you who have left comments on my blog for Randy — please know that I have NO idea if they ever get to him.  I’m blogging about him out of my respect for how he has approached his disease and the lessons he has taught all of us.  But whether or not he even knows this blog exists is a question mark.  You are more than welcome to leave your comments here!  But I don’t know if Randy sees them or not.

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Organized by Dianne Parker, the group was able to discuss safety initiatives and ideas, and remember those who have been lost due to medical errors.

The goal?  To make this world “independent” of patient safety violations — to save lives and stop the loss of them to medical errors.

Here are some of the dedicated folks who were able to make the picnic, all standing in front of the Consumer’s Union Cover America Tour Big Blue Bus:

Left to right: Curtis & Lisa Lindell, author of 108 Days, Houston, TX.
Helen Haskell, President, Mothers Against Medical Error, South Carolina
Kim Sandstrom, Mothers Against Medical Error, Ocala Florida
Dianne Parker, President, Patient Safety Advocates, Aiken, South Carolina
Lorin & Christine Jones, www.pamsjourney.org, Farmington, New Mexico
Dr. Ira Williams, author of First Do No Harm, Greenville, South Carolina

Missing from the photo is Sanjaya Kumar, MD, author of Fatal Care who was also in attendance.

………………………………..

Thanks to Lisa Lindell for sending the photo, and to all who attended for taking one more step toward awareness and solutions.  You are all fixers — and I appreciate that!

(Wish I could have joined you!)

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